The role of cognitive aids in Traumatic Brain Injury rehabilitation: a single case studyPresentation Transcript
The role of cognitive aids in Traumatic Brain Injury
rehabilitation: a single case study
In this paper, we discuss the impact of traumatic brain
injury (TBI) on memory and evaluate how cognitive aids
can assist in rehabilitation. For this single-subject case
study, we recruited a participant from a comprehensive
brain injury rehabilitation program. We examine how the
TBI has affected the participant‟s long-term and short-
term memory and discuss the compensatory strategies and
aids used for memory retrieval. In our research, we found
the use of a memory book is a common cognitive aid for
memory loss and view the development of an electronic
memory book as a promising concept. Potential barriers
to implementing such a device in rehabilitation include
lack of funding and resources as well as lack of consistent
Brain injury; assistive technology; cognitive aids;
ACM Classification Keywords
K.4.2. Computers and technology: Social Issues.
Human Factors; Theory
According to the CDC‟s National Center for Injury
Prevention and Control, approximately 1.7 million people
sustain a traumatic brain injury in the United States each
year. Of that 1.7 million, over 275,000 people are
hospitalized and 1.36 million people are treated in the
emergency room . Traumatic Brain Injury (TBI)
occurs when a sudden trauma damages one or more areas
of the brain . Leading causes of TBI are falls (35.2%),
motor vehicle-traffic crashes (17.3%), struck by/against
events (16.5%) and assaults (10%) . Individuals who
have sustained a moderate to severe TBI may be left with
significant disabilities that impact their daily lives
including problems with cognition, sensory processing,
communication and behavior or mental health .
TBIs are associated with cognitive deficits; especially
affecting memory associated with planning, organizing,
problem solving, making judgments and abstract
reasoning . Often, individuals with TBI are not able to
live independently due to cognitive deficits that make it
difficult to perform everyday tasks such as cooking,
remembering to take medications and attending to
personal hygiene . In addition to the day-to-day
challenges, they also encounter difficulty with more
complex or long-term responsibilities, such as keeping
appointments and performing multi-step tasks .
Decreased self-sufficiency and independence may lower
self-esteem and is often accompanied by some degree of
An individual that has experienced a significant TBI with
associated permanent brain damage and memory loss,
first, must regain their associations with the world around
them with the assistance of their support network
consisting of family members, nurses, doctors, therapists
and other caregivers. TBI rehabilitation is considered
most effective by using an interdisciplinary approach in
close communication with a support network .
Recent advances in technology, including the mainstream
use of portable and handheld computers, have led to
assistive devices for the rehabilitation of individuals with
cognitive deficits caused by TBI . Many technologies
can potentially replace the use of more traditional, low-
fidelity memory aids, such as calendars and sticky notes.
The intervention of assistive devices, also known as
cognitive prosthetics, into the lives of neurologically
compromised individuals can provide cognitive support
for multi-step task completion, as well as provide
intellectual stimulation .
Numerous electronic aids, including paging systems,
PDAs, mobile phones and personal computers, have been
found to effectively compensate for memory problems for
people with a traumatic brain injury. In a 2010 study,
researchers Wilson, Emslie, Quirk, Evans and Watson,
evaluated the use of a paging system for people with TBI
and found that the paging system significantly reduced the
everyday memory and planning problems typically
associated with TBI as well as increased the level of
Researchers Gentry, Wallace, Kvarfordt and Lynch
examined the effectiveness of personal digital assistants
(PDAs) as cognitive aids in a sample of 23 individuals
with severe TBI . All of the participants had prior use
of a memory aid, mostly with appointment calendars and
sticky notes. After a 3-6 session training period, the PDAs
significantly improved the self-ratings of the performance
of daily tasks as well as satisfaction with performance.
The efficacy of a PDA that contained scheduling software
with audible and visible reminder cues was also evaluated
in a study by researchers Kim, Burke, Dowds, Robinson-
Boone and Park . Nine out of twelve participants
reported the PDA as being useful for daily reminders
during the supervised trial and seven of the nine
purchased a PDA after the trial ended. However, two of
the participants did not purchase the device due to the
cost, which demonstrated limited accessibility of such
assistive devices for this population.
In research conducted by Stapleton, Adams and Atterton,
the use of a mobile phone as a memory aid was evaluated
with a sample of five individuals with TBI, three of which
were categorized as having „severe memory impairment‟
and required 24-hour care . Two participants revealed
an increase in memory successes during the first
intervention with the mobile phone. Although, for the
three participants with severe memory impairment, the
number of memory successes did not change with the use
of the mobile phone reminder system, which suggested
that the level of cognitive impairment and independence
should be considered before implementing a similar
device into rehabilitation.
When designing an assistive device, it is important to be
aware of the functions and features desired by people with
TBI. Hart, Buchhofer and Vaccaro evaluated consumer
experiences, attitudes and preferences of portable
electronic devices as memory and organizational aids in a
consumer survey study . Keeping track of money,
remembering things people said and keeping track of
things to do were identified as needing improvement by
more than a quarter of the eighty-person sample. The
device features rated as most important included the
ability to „store a lot of information‟, incorporating a „help
line‟ and having long-lasting and/or rechargeable
These studies provide promise for the use of portable
electronic devices as supplemental memory aids for
individuals with traumatic brain injury. However, it has
been estimated that over one-third of assistive technology
(AT) products are never fully integrated into a user‟s
Considerations should be made to developing a system
that is engaging, but is not overly cumbersome to the
cognitive load of the individual. Cognitive impairments
can make it challenging to learn and use assistive devices,
which often have to be customized to best suit the user‟s
needs. Other challenges include, limited income to
purchase the device, the time needed to learn how to use
the technology and lack of consistent support from family
members and other people in an individual‟s network .
Finally, it is important to acknowledge that technology
adoption is a multiple-stage process that also involves
numerous individuals in a person‟s caregiver network
with varying expectations and goals regarding the
assistive technology. Designers should aim to understand
and consider these expectations in the creation of future
assistive technologies .
Research Objective and Questions
In this exploratory case study, we sought a better
understanding of the cognitive deficits that an individual
was facing related to memory, as a result of a traumatic
brain injury. Since each individual‟s combination of
cognitive abilities and deficits is virtually unique, single-
subject case studies have been a major tradition in brain
injury rehabilitation . Specifically, we asked, “How can
technology play a role in supporting greater self-
sufficiency after the experience of TBI?” We addressed
the deficits in cognitive processing and functioning as
well as support for the completion of specific daily
activities and subtasks. We also analyzed current
compensatory strategies and the devices the participant
currently uses as a memory aid. Finally, we included the
family in the study to explore preferred features and
functions of a memory device according to the participant
and his/her family members.
This exploratory, single case study took place at the New
Focus program at Anixter Center, located in Chicago,
Illinois. The New Focus Program provides intensive and
comprehensive rehabilitation services for persons with
traumatic or acquired brain injuries. Participants in the
program have functional loss in three or more of the
following areas: community use, vocational, home living,
psychosocial or educational. The role of New Focus is to
assist in the re-learning of skills through participation in a
variety of individualized rehabilitation services, including
therapy, skill building, and vocational and educational
Therapy programs include counseling (related to re-
integration issues, post-traumatic stress disorder or
combat stress), occupational therapy, physical therapy,
speech therapy and creative arts therapy (art, music, dance
and movement). The program provides cognitive
retraining, vocational skill training, independent living,
social and recreational skill building as well as case
The participant was recruited from the New Focus
Program. Keith, aged 35, (whose name has been changed
to preserve confidentiality), sustained a severe traumatic
brain injury due to an assault that took place over two
years ago. In addition to the initial traumatic brain injury,
he experienced a stroke as a result of not receiving
emergency medical care until hours after the assault and
remained comatose for approximately two months. For
six weeks, Keith underwent intensive rehabilitation before
being released to his mother‟s care. Keith is the father of
two children and resides with his parents and his youngest
child. At the commencement of this study, he had been
enrolled in the New Focus program for nine months.
Observational and interview data was thoroughly
documented on paper by at least one researcher. A
computer with pre-loaded software was used in a couple
of the memory activities.
We conducted interviews in a conversational format with
the inclusion of several pre-determined questions
regarding the participant‟s history, the occurrence of the
injury and the impact on memory as well as
improvements noted throughout his rehabilitation.
Keith‟s memory book, a large three-ring binder with
tabbed inserts, was included in an interview as a way to
evaluate his memory. The memory book held personal
information, such as his name, his age, and the reason for
being at New Focus, as well as numerous photos of
immediate and extended family members. The book also
included a calendar, a list of contact names, addresses and
phone numbers, a journaling space and several memory
Interviews, interactions and observations took place at
New Focus over a three-week time period during May
and June 2012. The first author volunteered for eight days
gathering foundational knowledge about the program
through casual interviews with staff members and
participation in daily activities.
On eight separate occasions, we observed Keith
participating in one of the program activities and
documented any relevant observations. In six sessions
lasting approximately thirty minutes, we engaged in a
memory activity with Keith that included physical and
digital memory-related games. For a couple of the
computerized exercises, completion times were recorded
but this data was not used as a defining measure for the
purposes of this study. However, we made note of any
behavioral observations, particularly any compensatory
problem-solving methods employed by Keith.
We conducted three interviews, lasting in duration from
30 to 60 minutes, with Keith‟s mother. We asked
questions regarding demographics, the cause and nature
of Keith‟s injury, the affect of the TBI on his memory,
social interaction and her role as the primary caregiver in
Keith‟s daily life and rehabilitation.
In the thirty-minute interview conducted with Keith and
his mother, we addressed topics related to the cause of
injury, family structure, daily activities at New Focus and
at home as well as long-/short-term events and goals.
Most of these questions surrounded material found in his
memory book. We pointed to various photos in the book
and asked Keith to identify the person(s). Any
accompanying written descriptions were covered in order
to avoid leading him to the correct answer. We asked
Keith the same series of questions at the beginning of the
interview and at the end of the conversation to see if there
was any variation in his answers. Interview data was
documented in our notes.
Due to a severe traumatic injury to his left temporal lobe
and left hemisphere of his brain, Keith experiences
significant memory loss, both in his short-term and long-
term memory capacities. In the New Focus program, he
engages in a variety of memory and cognition building
exercises, games, and other memory improvement
activities. According to his therapists and his family he
has experienced “massive improvements” in all of his
memory capacities since he has been in the program.
Despite this noted improvement, Keith has a long way to
go in the rehabilitation of his short and long-term memory
recall and retention, as well as his cognitive and
emotional capacities. For instance, during our interviews
and interactions with Keith, we found that he is unaware
of his true age. He thinks he is 15 instead of 35 years old.
Sometimes, he does not remember that he is the father of
two children. When we pointed to a picture of his
youngest child in his memory book, he was unable to tell
us her identity, even though they live together in his
parents‟ home. However, he can easily recall many people
and events from his childhood.
Through our observations and interactions with Keith and
through our discussions with his mother and New Focus
staff members, we discovered that his working memory is
considered to be quite good and is progressively
improving. He demonstrates attention and focus for task-
related activities. According to his support network, he is
also showing increased initiative in the program and at
Compensatory Strategies and Aids for Memory
Sometimes during conversation, Keith demonstrates a
memory disturbance called confabulation where he fills in
holes in his memory with an untruth without the intent to
deceive. This is also known as “honest lying” 
Although there is a possibility that Keith may have some
conscious understanding of the gaps in his memory and
may feel compelled to provide an answer even if he is
unsure of its accuracy, this would require further
observation and evaluation. At this point, we assume
these are unconscious responses and not a compensatory
Early on in the interview process, we found that the use of
a memory book is a common cognitive aid for people that
are suffering from memory loss as a result of a traumatic
brain injury. Keith has two memory books: one at home
and another at New Focus. His mother and the New Focus
staff members will use the books to work on memory
exercises with Keith. It is important to note that at this
stage of his rehabilitation, Keith needs the assistance of
others to implement this tool into his rehabilitation.
Keith also uses electronic memory aids at New Focus
including computer game software, such as Memory
blocks, Memory Match, and Memory Matrix, as well as
online games including Boxes, Memory II, Memory III
from Sheppard Software and Lumosity. Research studies
by Cole and Dehdashti suggest that the ideal time for
incorporating an electronic memory aid into TBI
rehabilitation is after completion of the initial
rehabilitative therapy stage , which usually occurs over
a span of nine to twelve months. Implementing cognitive
aids into subsequent rehabilitation can address specific
deficiencies that the primary therapy was not able to
Depression and Other Emotional Distress
We believe it is possible that Keith may be experiencing
some level of depression due to his current state.
According to members of his support network, Keith
intermittently expresses feelings of frustration, irritation,
anger and despair. In these moments, he is remembering
things with more clarity and then appears to emotionally
shut down, and withdraw from others. His mother shared
a story with us about when she found Keith sitting alone
in his bedroom in the dark. When she asked him what was
wrong, he replied, “Maybe I should go and live with
someone like me, someone who doesn‟t remember stuff.”
At these times, he apparently is more aware of his
condition and perceives himself as different and isolated
from others. He also acknowledges how challenging this
is for his mother and appreciates her hard work in caring
for is needs, although he says he does not want to be
Still, there is a glimmer of hope in these moments of
increased awareness. We see these instances as positive
signs of progress and are interested in monitoring this
with the assistance of his support network.
When a person has severe memory impairment resulting
from a TBI, as in Keith‟s case, it dramatically decreases
their ability to authentically communicate and
independently function within society, which may
increase feelings of isolation, depression and anxiety.
Self-identity must be restored and built upon before a
person can become socially integrated within the complex
realms of the external world.
Through our participation in this research study, we not
only learned about the daily obstacles that Keith faces but
also of the significance of his support network. In our
interviews with Keith‟s mother, it became apparent
exactly how essential her role is in Keith‟s rehabilitation.
Often times, this role comes with intense challenges and
may exact an emotional toll on the caregiver.
Limitations of the Current Study
We acknowledge that the limited three-week timeframe
was not long enough to conduct a thorough research study
in the area of brain injury and memory loss. Further
discovery and exploration is necessary in order to confirm
or refute our initial assumptions proposed in this paper.
In addition, we are aware that a single case study cannot
be generalized to the larger TBI population, especially
because of the unique impact a brain injury has on each
individual. However, we can apply what we have learned
in this study to our future work with this population.
Design Implications for Assistive Technologies
In our exploration, we have discovered that deficiencies
in memory impact additional perceptual and cognitive
processes, such as attention, concentration and
focalization. Further understanding of how TBIs
adversely affect these processes can assist in defining
functions and features for an effective assistive
We were inspired by the use of a memory book in Keith‟s
rehabilitation and we see the value of developing a
memory book application for a tablet or smartphone.
Possible functions and features could include a calendar
with audio and visual reminders, a journal, daily progress
logs as well as memory and reading comprehension
exercises. However, because the effects of a TBI are
unique to each individual, it presents a challenge in
designing universal features for an electronic cognitive
aid. Therefore, features should be customizable depending
on the severity of memory loss.
Currently, we are still in the exploratory and discovery
phase, gathering information that will drive our design
requirements. It is fundamental to develop our
understanding of the different types of memory and how
they relate to each other. For instance, how can we design
an application that will extend the capacity of working
memory to achieving (longer) short-term goals? What
types of features would be helpful in improving long-term
memory? How do we develop a system that can be used
by the person with a TBI with minimal support? Once we
are able to answer those questions, we can then move on
to the next phase of iterative design.
Unfortunately, the TBI community remains one of the
most underserved in our society, notably in Illinois where
organizations like New Focus struggle to attain adequate
funding. This makes advocacy for the TBI community
more challenging, especially in designing technology that
individuals and programs can afford and implement into
rehabilitation. We assume that funding of these programs
will become more difficult in the near future, and we
foresee a different model emerging that is not solely
dependent on government resources. Advocacy through
active involvement and contribution to these efforts, help
to better serve organizations like New Focus, their clients
and the larger TBI community.
We thank Cynthia Putnam and Amy Laboy for assisting
us in finding a participant for our research as well as Lisa
Goldman, Yu-Hung-Lu, Arthur Riepenhoff and Tim
Donahoe for supporting us at New Focus. Most of all, we
thank Keith for participating in our research and his
mother for her willingness to share her experiences as a
caregiver and inspiring us to pursue further research on
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